Autism Watch: 2007

Archive for March 2010

It’s like a bad pepto commercial, this new stim.

Picture it like this…the house is quiet (ha, like that ever happens..)…wait, the house is not very loud. I’m working , or maybe even on a work conference call. I am focused. I am concentrating.

Blurrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrp. Roar.

Did a dinosaur just get in my dining room?

No, that’s just my son and his latest stim/tic.

Autism — it’s not just a ‘disorder,’ it’s an adventure. You may need earmuffs.

Did you know that there’s no such thing as a penicillin allergy? Or a peanut allergy? Isn’t it amazing?

I know, you’re thinking, what? She’s cracked..the move has pushed her over the edge. But I assure you, I’m not.

After all, if we follow the “vaccines are fine, you anti-vaccine people are bringing back diseases and you’re harming society” theory of late, if vaccines are safe for everyone, penicillin, peanuts, you name it,  must be okay for everyone, right?

If vaccines can’t cause adverse reactions in anyone — you know, that conglomeration of preservatives, aluminum and aborted fetal cells — then penicillin, peanuts and anything else that results in rashes, hives or anaphylactic shock can’t cause adverse reactions either. I mean, really, if they’re good for ‘most’ people, then they must be okay for everyone, right?

Now we know this isn’t true. We know allergies exist — some mild, some deathly. We don’t go around telling them that the side-effects of ingesting an allergen are really something else. No, of course not. Instead, we created epi-pens and we adapt our environments. Most importantly, we don’t scoff at those who suffer and tell them they’re wrong, that peanut really didn’t just make them swell up to the point of needing an injection or an ER trip. We don’t tell the person covered in itchy hives that he’s wrong, after all, that penicillin doesn’t make everyone sick, so therefore it can’t make anyone sick.

Not everyone who gets vaccinated has autism; not every person who takes penicillin breaks out in hives or has to be hospitalized. One’s accepted, the other isn’t.

Someday, a study will be done that compares the physical attributes of babies/small children about to be injected with a long list of things that are illegal in mascara and dog vaccines and food. It will take into consideration their immune system and the possibility that their bodies have something wrong genetically that doesn’t allow the vaccine ingredients to be processed properly. You know, like those with allergies experience when they ingest an allergen. It won’t just study the vaccines, but the effect those vaccines have on compromised immune systems or otherwise physically-strained young bodies. There’s a vast difference between studying the effects of vaccines and the effects of vaccines in conjunction with the bodies in which they’re being injected.

Someday this will make sense to those who are willing to listen. In the meantime, if you don’t believe vaccines are a problem, you’re welcome to your opinion, as long as I’m welcome to mine. I just want no more children and families to have to go through the nightmare of an autism diagnosis.

And if this is your first time reading my blog, I’m not a reactionary who talks about nothing but vaccines. I usually focus on the day-to-day life of dealing with a disorder that’s vastly misunderstood, and my amazing child who is a gift to my husband and I, a blessing that words can’t describe. I don’t go on rants a lot, but the “anti-vaccine” commentary gets on your nerves after a while. They just need to get the terms right — we aren’t “anti-vaccine,” we are “pro-safe vaccine.” Vast difference. (I don’t know a single “anti-vaccine” person, just people who want vaccines that we feel safe putting in our kids’ bodies.)

Today BB went back to school..for the attend a field trip. To the zoo. Lots of kids on a crowded bus on L.A. freeways. Yeah, I know, I’d have second thoughts, too. I didn’t chaperone — being in neverending escrow changes your availability and I stayed home. Working. Fun stuff.

I dropped him off at school and approached…<deep breath>…the mom who won’t let her son play with BB very often. The mom who supposedly said  BB is “trouble,” and who isn’t happy with his behaviors. I’m leaving in two weeks, why not, right? You’re right, why not. I explained about BB, talked about how much he loves her son, how important their friendship is, and why I wanted her to realize that he wasn’t a brat. He’s my son, and he has autism.

Ten minutes later, I’ve learned that while she already knows he has autism (thank you, big mouth neighbor who needs gossip fodder..karma will bite you someday), she basically defended her son and didn’t affirm to me that she’d teach her son anything. “Oh, I know autism, my step-brother’s child has it and is the same as BB.” Are you more flexible with your step-nephew?

I left school glad that I’d faced the lady, but sad that it didn’t really change anything. Then I came home to go to work, and lost the whole day with escrow issues, work meetings, and stuff with the rest of the family.

He came home..after a call that he was back early and could be picked up..and he wasn’t happy. “The field trip sucked, Mom.” Sigh. He couldn’t see animals due to kids in the way. He was punched and picked on. Verifiable? No, because I’m sure if he was punched and someone saw it, they’d have stopped it..but in his mind, the day sucked. I’m sad. A zoo trip, for a child, should never suck.

And the zoo sunglasses? They okay’d us sending money if the kids wanted to buy something in the gift shop. I know from firsthand experience, it’s a nightmare coordinating that for the teachers/aides/chaperones, but why not, we gave him $11. Why $11? Not $10? For $11, he could purchase a $9.99 item and have money for tax. I told him before he left for school, “the most expensive thing you can get is $9.99.” So he did, $9.99 sunglasses. And they rock. He looks like the doll that he is…a cool doll, but a doll nonetheless.

He’d wanted to go back to school his last week here. Now? I don’t think so. I’m sad for him, but to see him so happy here at home, I’m okay with that. I watched the new show, “Parenthood” on NBC, and was encouraged to see them portray a verbal child with autism so accuratelyl. I cried. My husband cried. And I cried again. Thank God for a DVR, we could pause while drying our eyes. Thank you, NBC and the producers/directors of “Parenthood” for being oh so realistic. It hits home…and we will watch week after week after week.

Autism sucks. Our children, they don’t suck. Find their gifts and play with them, get involved in their world. Oh how I wish every doctor and professional advised us parents of that.

BB’s been on independent study for several weeks now. While I have absolutely no, zilch, nada…as he’s home with me 24/7, he’s happier. His anxiety levels are way down, and his anger issues are much better. But, he is at the point where getting him to leave the house takes some work. He doesn’t want to leave for just anything. He never really has, but it’s worse now. Errands? Heck no, mom, I don’t want to go there. Take my service dog for a walk? Mom, it’ s cold out there, and I’d have to get fully dressed! (I may have to give him that one. It’s been cold and rainy for weeks now.) But, I told him today that we were taking a break from the house — it was sunny and bright, although still chilly. Snow is so shiny in the local mountains/foothills, you can practically see the cold, but it’s gorgeous, so I was bent on a trip to the park.

Fast-forward to 1pm. He gets dressed, and is fine with it. We had a good talk about zombies and their weaponry on the three-minute drive, and then we climb out of the car, walk halfway through the field to the play area and realize it’s flooded. Good one, Mom. Good plan. Where’s the sidewalk???

His face falls as he realizes we’ re not alone. There are other kids playing. Worse yet, other kids playing together. He climbs for two minutes, then runs away and hides in an empty picnic kiosk a bit away. I follow him, only to find out he wanted to be alone. Sigh. I move to the sun to drive off my dripping flip-flops (I know, I know, but it IS still California) and attempt to talk him into swinging with me. No, Mom, there are kids on some of the swings. Yes, honey, but some swings are empty. He marinates that thought for a bit, then jets away. I pick up my dripping poor choice of footwear and follow. We climb on swings, which were blessedly ALL empty by that point. I get on one end…he gets on the other. We swing…for three minutes. He gets up, runs off, I hop off and for a split second can’t see him. Where’d he go?

Oh yes, silly me. What mother doesn’t look under the slide to see if her child is laying behind it, prostrate on the ground? Sigh. “Want to go home, Honey?” Yes, Mom. Autism somehow had snuck along for the ride with my adorable, loving, super-intelligent son who has major social skills issues. And sadness over a serious lack of friends.

We climb in the car. Park trip=not a success. But, he did agree it was nice to get out in the fresh air. Since he’s communicative and willing, we stop at the Rite-Aid for a double-scoop of ice cream..him, not me. (The scale told me yesterday that I need to take a few days away from extracurricular snacking.)  Ice cream makes it home, and he’s a happy child all over again. Autism, you aren’t invited to our next park trip.

I help him floss his teeth. He brushes. He has me smell his breath.

He agrees to shower in the morning and knows I will remind him.

He takes the blanket I’ve just pulled from the dryer and “makes” his bed. He gets his service dog’s bed as close to him as he possibly can. He covers up Charlie with the blanket he slept on since he was a puppy, and hugs him goodnight.

“Mama, I’m ready for cuddles.”

I lay down next to him for big hugs. He tells me about a new episode of his latest favorite show. We talk about the cookies we’re going to make tomorrow, and I think about how much I will enjoy watching him use his little fingers to wrap dough around Hershey’s Hugs, and I know he’ll only make it through about one batch before he tires and I do the rest alone.

I give him a big kiss, and tell him I love him more than anything he can say. He agrees to wash his face in the shower. He gives me a kiss, as I tell him he’s my special boy I love so much. He tells me I am the most awesome mom.

I feel tired before I go out there. When he’s ready to go to sleep, I’m sorry there’s not more cuddle time and I’m awake. I can’t wait for morning snuggles on the couch.

As I’ve bemoaned about recently, we’re in the midst of a move. We’re excited about moving but the move itself, not so much. It’s work. A lot of it. It’s chaos. As I type this, I have a bottle of barbecue sauce next to me on the table, because I was packing up our Nascar cabinet and I am not moving a bottle of barbecue sauce, even if it has a picture of our favorite Nascar race car on it. We love our driver, but barbecue sauce sitting in a box for six months…no, thank you. Past the barbecue sauce is a stack of boxes, and an empty hutch that once held our Nascar collectibles. Tons of it. Wow, I could sponsor a race if I sold it all. It was no easy feat packing up the autographed memorabilia, the occasional lug nut and odd items collected from race tracks for the last six years. Beyond that, empty boxes, calling my name, screaming “Pack pictures in me! Wrap the rest of your wine glasses and put them in me too!” Then there’s my couch, nestled amongst those boxes and a pile of displaced items that had a home on a wall unit until my husband moved it to put it in the 53′ trailer we now own in the morning. And that’s just one room, so you get the idea. (I’ll spare you what my bedroom looks like, devoid of half its furniture and items, leaving me wondering how I’ll peacefully sleep in there for the next 2-3 weeks.)

Last night, I had to go through BB’s toy cabinets. He has two huge ones, and there was overflow under his foozball/air hockey table, and in his sister’s closet. It took me quite some time to sort out the things I knew he wouldn’t want, and then to ask him over and over, “Do you want this? What about this?” “Mom, I’m too old for Hungry, Hungry Hippos..” and “Mom, we played Guess Who so much at therapy, I don’t want it anymore.” On one hand, I was repeatedly thinking how great it was that we only had to pack half of his stuff. But on the other hand? My baby is growing up!

There was some sadness as I stacked Chutes ‘n Ladders in the garage sale pile. We’d played that game over and over. It didn’t require him to speak or maintain eye contact, and he’d win almost every time. The cards that he’d sort out and lay out perfectly in order, side by side, not off by a hair went, too. I almost kept them, but what in the world would I do with them? They were a good memory, because we’d spent hours upon hours working and playing together, but they were bittersweet — they were such a sign that he had autism, and I never picked up on it.

I was so happy when he chose to pack his Ratatouille chef’s hat and apron. He looks so darn cute when he puts them on and makes his famous Club Cracker, mustard and deli meat sandwiches. He decided to keep all his dinosaurs and his pirate swords, but I was sad when he put the “little kid” pirate costume in the go pile. Sniff. Then we got to things I was sure he’d keep, all his Hot Wheels and Matchbox buildings and garages. “Mom, I’m not a little kid anymore.” Then my husband just had to chime in, “His interests have changed, it’s okay.” I think he knew my ambivalence about seeing some other kid run away with Rocket Park playset, something he’d play with for hours, even if he played with it a bit weirdly. When the entire Little People world goes, for not a cheap price, I may cry.

He’s got a new interest in drawing this week, and it’s one that fits right in with his computer animation and gaming interests. We’ll definitely be encouraging it and getting him whatever training he wants, as long as it remains fun for him. He drew an eagle that easily rivals something a much older child would do, and Dad was amazed at how fast he did it. (Dare I say that part of me is thinking a-ha, I passed something down! I was an art freak and an art major. It’s still a love of mine, though now I mainly view art instead of creating it. Who has time and the kind of focus it needs?)

Now we’re at the phase of the move where he just wants it over with. The disruption of his bedroom and routine is getting on his nerves. When he asks for a new subscription for a month to Club Penguin or wants to go see a movie on a certain day, I have to remind him that we’ll be on the road for five days, and in transition a few days before and after that. Online time may be at a premium. (Then again, we are staying at KOAs with wi-fi all the way through our drive.) He wants to move, but doesn’t hesitate to remind me, frequently, how much it’s getting in the way of his normal things. Sigh. Please, Lord, let the rest of escrow go smoothly and let it all come together so we can really be out of here soon.

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